Diane Nelson Bryen, Ph.D., Temple University Yvonne Gillette, Ph.D., University of Akron

1. Advancing Cognitive Technologies through Multi-Site Collaboration Diane Nelson Bryen, Ph.D., Temple University Yvonne Gillette, Ph.D., University of Akron Murdo Dowds, Ph.D., Spaulding Rehabilitation Hospital, Harvard Medical School RERC-ACT State of the Science Conference October 26, 2007

2. Background • NIDRR - DRRP focus • Assistive Technology • Cognitive Disabilities • 5- years with $300,000 per year • Collaboration • Multi-site • Disability and age expertise • Research & dissemination expertise • Sharing the work

3. Collaborators • University of Akron, School of Speech-Language Pathology - Children and adolescents with TBI and Intellectual Disabilities • Temple University, Institute on Disabilities - Adults with Intellectual Disabilities • Moss Rehabilitation Center - Adults with TBI (Year 1 only) • Spaulding Rehabilitation Hospital, Harvard Medical School - Adults with TBI • Brain Injury Association of America –Dissemination and Policy

4. Collaboration • structured, recursive process where two or more people work together by • building consensus • sharing knowledge • sharing the labor…….. • toward a common goal

5. Goals of the AT & CD Collaborative -- 5 Years • Identify trends in use of generic technologies: electronic organizers (PDA), cell phones, and later smart phones among children and adults with TBI and ID; • Conduct usage trials to determine effectiveness of using generic electronic memory aids among children & adults with TBI and children & adults with ID; • Provide consumers, manufacturers, and other stakeholders with information about the enhancers and barriers to the use of PDAs, cell phones, and the WWW; • Disseminate catalog of relevant electronic devices to consumers and caregivers,

6. Why Generic Technologies NOT specialized AT? • It is in the public domain - we all use it! • The prices are more reasonable for purchase and replacement! • These devices are more socially acceptable! • The adaptations needed and that should be recommended to manufacturers will aid all of us!

7. Collaborative Methodology • Jointly developed the survey of use of generic technologies to enhance memory and organization: questions, sampling, method, and analysis • Conference calls, face-to-face meetings, work groups lead to survey research that included: • Larger sample size for overall analysis • Ability to address children and adults • Ability to address TBI AND Intellectual Disabilities • Inform our approach to the in vivo usage trials • Resulted in individual research findings and joint findings • Ability to immediately disseminate findings through collaborators to TBI and ID stakeholders

8. Collaborative Methodology • Jointly developed the in vivo usage trials that were common across all three sites • Conference calls, face-to-face meetings, work groups lead to survey research that included: • Larger sample size for overall analysis (35 per site) • Ability to address children and adults • Ability to address TBI and Intellectual Disabilities • Data that can be analyzed by individual site, individual age group, individual disability group, and across all sites (ages and disability groups) • Ability to immediately disseminate findings through collaborators to TBI and ID. stakeholders

9. Highlight Some Results/Outcomes Catalog on BIAA Website - approximately 20,000 hits for catalog

10. Highlight Some Results/Outcomes Town Hall Meeting Webcast - reaching 312 sites

11. Highlight Some Results/Outcomes – Survey FindingsStrategies for Remembering Contact Information

12. Highlight Some Results/Outcomes – Survey FindingsTechnologies Used

13. Highlight Some Results/Outcomes – Survey FindingsImportant Technology Features

14. Highlight Some Results/Outcomes - FindingsWidely Disseminated Across Disability & Age Groups • Gillette, Y. & DePompei, R. (2004). The potential of electronic organizers as a tool in the cognitive rehabilitation of young people. Neurorehabilitation, 19(3), 233-243. • Hart, T., Buchhofer, R., & Vaccaro, M. (2004). Portable electronic organizers vs. memory and organizational aids after TBI: A consumer survey study. Journal of Head Trauma Rehabilitation, 19(5), 351-365. • Carey, A.C., Friedman, M.G., & Bryen, D. (2005). Use of electronic technologies by people with intellectual disabilities. Mental Retardation, 43(5), 322-333. • Bryen, D., Carey, A.C., & Friedman, M.G., &. (2007). Use of cell phones by adults with intellectual disabilities., Mental Retardation, 45(5). • Gillette, Y.& DePompei, R. (in press). Do PDAs enhance the organization and memory skills of students with cognitive disabilities? Psychology in the Schools.

15. Highlight Some Results/Outcomes – In vivoUsage Trials: Findings • Students (with TBI & ID) and adults with TBI benefited more from the electronic devices than the paper planner or baseline; less clear for with adults with ID • High between-subject variability for all groups • Students (TBI & ID) in least restrictive environments and adults with ID not in sheltered workshops did the best • Effective Use of electronic organizers NOT dependent on IQ within age and disability groups • Better performance with Palm over Dell, especially for adults with TBI

16. Highlight Some Results/Outcomes - Improving Access to Cell Phones • Based on survey of 83 adults with Intellectual Disabilities1 • Larger buttons • Menu prompts • Voice activation and voice output • Supported by Trace Center and CTIA2 • Adjustable scroll speed • Standard icons • Automatic answer & automatic redialing • One-touch dialing • Picture ‘caller identification’ • Voice dialing • Voice messaging3 1 Bryen, D.N., Carey, A. & Friedman, M. (in press). Use of cell phones by adults with intellectual disabilities. Mental Retardation. 2 http://www.AccessWireless.org/product/consumer_access_guides.htm 3 Source: The Wall Street Journal, 09/29/2005

17. Highlight Some Results/Outcomes -Improving Access to Electronic Organizers - Features • Recommendations for improvements in features and functions • Source: 32 adults with Intellectual Disabilities (ID) and 35 children with ID or Traumatic Brain Injury (TBI) - also support personnel • Feature Recommendations • Use of icons to augment print • Louder volume for alarms • Continued sounding of alarm until deactivated • Adjustable screen brightness and contrast to aid reading the screen • Improved battery life • More accessible & usable manual and troubleshooting guide • Voice output to augment print (text to speech and speech to text) • Larger print and bigger icons • Internal back up of memory within the device, not just sync to computer • Improve wear ability • Add a locator-special tone (quite loud) to alert user to get device in a.m.

18. Highlight Some Results/Outcomes - Improving Access to Electronic Organizers: Functions • Function Recommendations • Add more fun features on standard device: A balance between “fun” and “functional” keeps users motivated • Add a phone function at a reasonable cost (accessible and usable smart phones)

19. Improving Web Accessibility for People with Cognitive Disabilities1 Use pictures, graphics, icons and symbols to augment text. Simplify writing/reading  Use clear and simple text with commonly-used words.  Use short, simple sentences. Maximum 20 words per sentence.  Reduce amount of reading. Limit text on page.  Use short paragraphs, bullets or numbers rather than continuous prose.  Use active verbs Say ‘we will do it’ rather than ‘it will be done by us.’ Use consistent navigation and design on each page. Use headings, titles, and prompts rather than long paragraphs. Support screen readers. Use alternate text tags. Use larger fonts, fonts in minimum 12 pt or 14 pt. Some guidelines suggest 14 pt, 18 pt or 20 pt. Use uncluttered, simple screen layout. Present one idea at a time. Maintain white space. Use one-column layout with generous margins on each side. Make web site customizable. Provide for individual choice for items Font size, placement of navigation, contrast, color, large print and sound. Use navigation aids. Exit, home, help, next page buttons on every page. 1These features are based on an extensive analysis of twenty (20) of the existing Web Design Guidelines for Cognitive Disabilities. Only the recommendations where there is at least 25% agreement on the feature have been included. Mark Friedman & Diane Nelson Bryen (2005). “Web Accessibility Design Recommendations for People with Cognitive Disabilities.” Institute on Disabilities, Temple University.

20. What Have We Learned? • Electronic aids are useful for some persons with memory/organization problems as a result of cognitive disabilities. • Evidence based studies, such as the ones we have conducted, are emerging to support use. • Generic devices may be most accessible and useful • Handhelds (Mobile Devices): PDAs, smart phones • Computer based devices: internet, e-mail,web-based (Health Assistant)

21. What Have We Learned? • There are functions/features of generic devices that might need to be altered to facilitate usability/universal access • Generic devices have appeal because • Socially more acceptable • Prices are lower than “dedicated devices” • General public understands use more easily

22. What Have We Learned? There are barriers • Cost • Perceived Lack of Need • Lack of Training and Supports • Lack of Accessibility in Design Features • Cell phones/smart phones • PDAs • Web

23. What is Not Known? • Who within the larger population of folks with cognitive disabilities can benefit? • Is there a larger base to consider? Of interest to manufacturers? • 22 million people with cognitive disabilities • TBI • Intellectual Disabilities (aka Mental Retardation) • Dementia • Global income of people with disabilities exceeds $1 trillion (2001) • Annual discretionary income of Americans with disabilities exceeds $175 billion 10 10 10

24. What is Not Known? • What factors besides the TBI or ID are significant? • Motivation • Supports • Opportunity • Prior experience with technology • Digital divide issues • Does exposure to technology at younger ages make a difference?

25. Who was Missing from or Under-represented at the Table? • Manufacturers of Devices • Our discussions with them revealed most of what we are asking for is already available or doable—just not readily accessed or cheap to do (White Paper available from DePompei) • Vendors • Businesses already have software/ programs to make what is recommended by researchers do-able. • More people with disabilities, families and advocates

26. Answers will be found through collaborations….. among • Manufacturers of Devices • Researchers and Developers • Consumers and advocates

27. Questions???